Archive for September, 2009
My “regular” readers or followers etc… know that I was laid off from my job a year and a half ago. Since then, beyond merely trying to gain employment etc… Unimaginable things have happened.
Well, let’s chalk another one up on the board. Fuck me. A friend that I have known since 1997 (who knew all about my job loss–I contacted him immediately), fell off the radar. Others did too. I have been thinking of him.
Other, perhaps very long time readers, would know him as Mac Guru.
I checked my personal email account, and was astounded to see that we hadn’t emailed in a year! Well, surely contact was in order!
Now, how do you condense a year’s worth of information into one email? I tried to limit it to only certain things. What I thought should be the most pertinent details? It took me a fair while to compose this email. Then, I thought, I should move on to other people. Yes, start with my Dear Mac Guru. He was always the closest friend.
As I sent and exited…thought about who should be next…can you see it coming…
Where did you go! You don’t live that far away from me! Every time you come to where I live you always call me and we meet for lunch, dinner, go shopping…
It’s been a year…!…
I still have his phone numbers. I hope they haven’t changed too…
I was exchanging emails with someone and it wasn’t really a “competition.” Perhaps, merely, “story swapping?” We were talking about some really bad relationships we had experienced in the past.
Let’s say she topped me in that department. Based upon our discussions, I don’t know if I should feel better or worse! *laughing*
I give you: “Nervous Breakthrough” by Luscious Jackson.
Let’s all shake it, and dance to messed up, screwed up, and disastrous relationships!
My bike is now in my very, thin hallway. Due to that fact, there is an extremely, high per centage rate that the EMS folks are soon to become my new best friends. Even though I’m quite tiny, and there are a lot of Firefighters and Paramedics out there, I’m sure enough space can be made for all of them to sign my full body cast when it gets to that point.
Hey, good friends are hard to find! You have to “make room” for them no matter what! *much eye rolling and laughter ensues*
PA in hospital bed surrounded by new best friends: “OW! Don’t make me laugh so much! That HURTS!’
Attending social gatherings can be one of the most painful and insidious things, for someone with Asperger’s (or anyone, anywhere else on the Spectrum), to deal with. I need to do this tomorrow. I have known about it for a while, and am so, disgustingly anxious. The anxiety is growing, as the time is passing. It would have definitely been worse, had it been sprung on me with less notice, but even still! I will probably need some Valium? *PA nods*
What is this “Garbage Party?” Well, it’s a load of “garbage” on several fronts! I live in a house that has been converted into three flats. I have no clue how long our idiot landlords (“garbage landlords”), have owned it. Thus, no knowledge of how many tenants have come and gone.
We have a shed in the backyard for storing things. Tomorrow, it has been decided that we will clean out all of the “garbage,” that has remained for who knows how long. We three that are currently existing here, have no bloody clue what prior, tenant, flotsam and jetsam has accumulated over the past. And there is a lot of it!
What is also deemed as “garbage” to me, is that I only have a few things inside the shed. My bike, its pump and some other miscellaneous items. After I remove them, I feel that my job is therefore done. Everyone else can still remain to go through the rest! Unless, what? We decide to have our own little “Garbage Yard Sale?” Or “Garbage Auction?” Gah. I don’t think anyone even cares, as it’s all “garbage!”
I had already suggested this to my landlord earlier. Let me just remove my things, and I’d be done with it all. Especially since my bike would have to be removed first, anyway. It’s the largest item in the shed. Afterward, just continue to grab the rest that’s left. It went completely over his head. It wasn’t even acknowledged. Perhaps he thought what I said was “garbage?” I doubt it. He doesn’t seem to think at all, you see.
Oh, wait. In all fairness, I suppose I will need to pitch in and assist with the “garbage disposal.” I never picked up on that one. I think that’s a load of “garbage,” too! The biggest, in fact! It should be the “garbage landlord’s” responsibility, in terms of upkeep of the property. However, they make us, we lucky tenants do that instead of them.
What a load of “garbage.” *PA shakes head*
I’ve still been looking. Looking at my face. I have high cheekbones. Or so I have been told? Yes.
Or so I can see? Now? Yes.
Cue: “Chopin Nocturne” (no, I am listening to it, soothing and appropriate.)
I am looking again in the mirror, but not for vanity’s sake, no. For understanding.
My ex-partner called me “Gaunt,” when I became extremely, disgustingly ill. Completely out of the blue due to gastrointestinal problems. Problems? Indeed! I dropped roughly 25-30lbs. and half of which, was in two weeks. 10 of which, I have now attained back.
Which returns me to my cheekbones. And being: “Gaunt.” I am showing shadows beneath them. Is that a sign? I am smiling now. It is taking me back to my Goth days, trying to look so “Gaunt.” Well, who now at 39 has had the last laugh! I am smaller now than I was when a teenage Goth! This is the smallest I’ve been since…well, before I was even an adult?
And yet, even through all of the gastrointestinal illness, I did not look “Gaunt.” No. And my bones did not show through so much. Not as now? No? It’s not extreme but I am seeing it. Even as I type now, I see my wrists… *shakes head*
Perhaps it’s time to get some of that great, black gear; get myself decked out head to toe. It looks like I may definitely suit the role. More so than I did as a teenager. Definitely.
I saw Merlin #2 today, and the first thing he said to me was, “How much weight have you lost?!” *laughing* I responded in my typical fashion, not knowing what the fuck I look like, with a blank stare. This was of course after we had our happy exchange of:
“You ready PA?” (Merlin #2 more bouncy with PA, as opposed to any other patients)
“You got it Baby! Batter Up!”
Yes. That was our exchange. Why I made a baseball reference today, I have no clue. It was just the first thing that popped into my head. And yes, I called Merlin #2: “Baby!”
I just said I’d jump on his scale. I did the same thing at Non-Arsey Neuro’s on Monday. They both showed the same: 100lbs. with clothes on. That would mean a bit under 100lbs. You subtract a couple of pounds or so for your clothes.
I’ve been staring at myself for a while. I am a bit more “bone-y.” However, the scale is not reflecting… My face is… My cheekbones are more prominent? My clavicles? My hips, or pelvis? My wrists? Yes, they all are? My watches and my Medic-Alert Bracelet. They are now sliding further down my forearms.
I don’t understand this. I am losing mass? However, my skeletal structure is still weighing me in the same? Perhaps a couple of pounds on wee PA is enough to show a difference? I have no clue. I’ve lost weight but the scale isn’t showing it? My body is reflecting it but the scale isn’t measuring it? *PA shakes head*
Well, enough about that! This is going to be long enough!
We next moved on to the tonic-clonic that he never even knew I had several weeks ago–thus necessitating me cancelling our appt. the day after. *rolls eyes* I mentioned that Non-Arsey Neuro had concerns over my Stims re: my tonic-clonic, and Merlin #2 agreed. I then went on to make a very good argument to not take me off them!
In doing so, I said I would lose all that they have done for me. I can now read again! They helped me so much with my job (before I was laid off!) I never had any lowering of my seizure threshold before when I was on them. My seizures were completely under control before I lost my job, and finally…TA DA! By taking me off them, I would spiral down into a deep, dark, ugly depression that could also lower seizure threshold!
HA! Take that! Merlin #2 agreed. *PA grins*
Next! Merlin #2 filled out a form I need for the stoopid guvmunt, in order to beg for some paltry sum. Or sums? Either way, I am going more and more broke as…well, never mind. Let’s just say things are a disaster for me financially. I never thought this would happen to me. If I don’t get a job soon, I may be forced to…never mind.
More stoopid guvmunt? I called about the drug program that I am on. They have been siphoning me dry, as I have been paying out of pocket for all of the damn meds I have to take. It costs me hundreds of dollars a month just to try and keep my head working! I have been waiting as “patient”ly as possible for a reimbursement that is due for exceeding a/my/their co-pay. Well.
Apparently it takes months for this to happen. I started this plan in February of last year. I will be getting my reimbursement (or so I have been told), at the end of this month. I am not holding my breath.
One good thing? I had a shitload of scripts to fill from Merlin #2 today. W00t! Perhaps because I’ve paid the stoopid guvmunt $1,000,000 already, for this quarter I’m done! The pharmacy told me everything was FREE!
FREE! FREE! FREE!
I walked out the door with what would have cost me, two to three hundred dollars, perhaps? I’m not joking about that dollar figure and those are just for a month’s supply of some.
OMG. A tiny shred of good news…finally?
FREE! FREE! FREE!
Well, only for maybe a couple of months more but I don’t care! I’m hanging by threads here!
I owe a massive thank you to a fellow Twitter pal, who sent me a link to an online comic site. There’s more to look at, but I have just started reading from this url. It’s the Index Page, and when you look at the first section, it’s not the beginning. So if you do read, don’t start there.
Again, more available, but I haven’t had a chance to look as I’ve just started “Weregeek.”
This is the part that just threw me into stitches right now, being a huge Anime and Manga fan.
OMG. *PA laughing so hard*
This is just one of those songs where I could say so much. Too much, in fact. So, I won’t say anything at all.
“The Reason” by Hoobastank
Bear with me. I can barely see. This post may be a mess.
I went to see Non-Arsey Neuro who was most accommodating. He fit me in after I telephoned him this morning. I tried to mumble all of the information I wished to convey to him within our app. 20-25 minutes together–mostly about (what I believe to be) my fried hypothalamus.
He questioned me being on my Stims. I retorted, and didn’t quite get to the point of begging him not to take me off them. That is because he didn’t say he wanted me off them. However, I did state how important they were to me, how much they have helped me, and that I have never had problems with them before.
We also touched upon my ACs but not so much. I made a brief mention that my current ones did great things for my Bipolar. Therefore, I was very happy with them.
The course of action from this point. A continued, “Wait and See?” Realistically, this makes sense. Non-Arsey Neuro can not simply snap his fingers and make this go away any more than I can. However, as I stated and wanted, a much needed MRI Scan. I’ve only had one and that was several years ago. This situation obviously necessitates it. Also, we are going to toss in another EEG for fun? They’re tremendously unreliable but why not.
It appears that I was entirely correct about my arrhythmia, although I received a bit more of a surprise? My resting pulse was 120 which is kind of high (as per my noted arrhythmia–I’ve been feeling my heart bouncing around ever since this tonic-clonic happened.) 120bpm as a resting heart rate can basically send you close to Tachycardia Land, but at least my pulse is consistent. Not so bad there, at least?
The “surprise?” Indeed! My blood pressure. My blood pressure has always been within the normal range; never high, never low. It can vary with people, but a “typical” measurement that gets shouted out a lot is 120/80. Gee. Guess what mine was?
Hello! So. It appears that wee PA has a bit of “Tachycardia” and “Hypertension” going on? I mean, WTF??? I did not expect any issues with high blood pressure. However, why should I be surprised at anything anymore? I mean, this is all about my ANS and still, my damn, nuked hypothalamus that controls so much of your ANS and yes, blah, blah, blah…everything that I have hypothesized?
I honestly don’t know what to say anymore. I don’t know if there IS anything I can say anymore! At least from a scientific, medical, research perspective. I don’t know if there’s anything left out there. I think I may have exhausted both the literature and myself! So what now?
As above, I’m not putting much, if any, money on the EEG. The MRI? Will it actually show something? Will it show anything? Will it show nothing? As in, my hypothalamus is gone altogether! I no longer have one! My hippocampus? Hippocampal sclerosis? Has my hippocampus been nuked, too? Eroded to the point of extinction? *rolls eyes*
Seriously, though. Have we gotten to the point where we are looking at Anatomical structure that has then resulted in Physiological change this marked and distinct (not to mention pretty, fucking ugly.) I don’t want to start getting worried or scared but I’m running out of plausible explanations here. Well, those too, but now possible and actual remedies.
How long am I supposed to remain so goddamn debilitated and how the hell do I get better??? If you do have Epilepsy, can one single seizure in your life destroy you? Have I tipped some kind of scale with my increase in seizures, the different and new types over the past year and half, that my brain is now seriously damaged? Like, seriously damaged!
I’ve suffered previous head trauma, albeit slight. Is that a factor? I suffered from high fevers as a child, although no mention of Febrile Seizures. However, there have been studies suggesting one of the Herpes Virii that is linked to MTLE (Mesial Temporal Lobe Epilepsy.) Just about everyone in the world has it lying dormant in their bodies, and it is extremely common for babies to contract the infection. MTLE is the big banger for hippocampal sclerosis!
I know, it sounds like I’m spinning my wheels a lot with this one. I know. You could “easily say,” or tell me: “PA, don’t jump to conclusions!” I agree with you. However, I’m tired, I’m frustrated and I’m sick. I’m also at a crossroad. No, worse. I’m in a sort of “No Man’s Land,” regarding this and I am debilitated. I can’t function.
Perhaps if I least knew why, or had some kind of answer, anything… Perhaps then I’d be able to handle this situation somehow. Perhaps in a better way. Perhaps.
It would appear that Tsarina Seizurella© may have some pull with Non-Arsey Neuro. Or, perhaps the fact that she is still sick for nearly, three, bloody weeks after a tonic-clonic seizure! Maybe both?
The Empress of ADD© also had to wake up early this morning. She had to call Merlin #2. She’s been so out of it, she hasn’t been keeping track of her meds and is running out of several things. Most importantly (wait, they’re all important!) the Seroquel/Quetiapine and the Concerta/Extended Release Methylphenidate. Of course, with the latter, no refills and no call-ins to the pharmacy because she is going to start peddling her Amphetamines on the street corner, don’t you know!
Over her dead body! They’re too valuable to her to try and maintain some shred of sanity.
So, back to Non-Arsey Neuro. Oh! Tsarina Seizurella© is now being treated by her Neurologist, in a manner that is worthy of her title? His receptionist didn’t even wait a single minute before Tsarina Seizurella© could explain a thing! She just said she’d transfer her to him! His line was busy and she was asked if she would mind waiting. Absolutely not!
Then, when she got through, Tsarina Seizurella© barely managed to utter a few words. She’s very tired as per the title of this post, and sleep was rough for her. Up too late and difficulty falling asleep due the stress of so many (unpleasant) things to do.
Some of those words that barely escaped her mouth, however: Circadian Rhythms, hypothalamus, hormones, possible arrhythmia, MTLE (Medial Temporal Lobe Epilepsy), New MRI. I think that’s it when Non-Arsey Neuro cut Tsarina Seizurella© off. He then asked: “Why don’t you come in around 1600hrs?”
Tsarina Seizurella© just about dropped the phone, regardless of how tired she was. Oh, my! Yes, some royal treatment going on here? However, as tempted as she was to just roll back over and go to sleep (a doubtful accomplishment anyway, when awake; then awake?) Tsarina Seizurella© has decided to stay up. She needs to get all of this business together in a decipherable form. All of the research, her own notes and files. Everything has just been piling up over time. She still feels like crap so it’s going to take forever, anyway. Her brain is moving like a snail on Quaaludes…again.